A New Chapter For 2018


Honestly, I’m glad to see the back of 2017

Have you ever felt like the proverbial herd of turtles trying to run through peanut butter? Gary’s health gave our family a few frightening moments the first half of 2017. Reality hits when you’re waiting alone in an ER, 200 miles from home. One step forward five steps back, so we’re ready to move forward and welcome a new chapter for 2018.

I hope you’ve had a chance to check out our new Tidbits And News page. We needed an area to post bits of news we run across or research topics. It’s an understatement to say I read a lot, so it’s always exciting to stumble across a story in mainstream media about a fellow SS’er. I’ve added a new one today.

 Speaking of a new chapter

One blog topic I hope to cover this year is nanotechnology. There is interesting research relating to nano-particles being combined with chelators to target hemosiderin in the brain and spine without affecting the iron levels in the rest of your body. I’ve added four new research papers to our download file menu if you care to read them.

 Looking ahead

We have plans to expand our anosmia information this year to include an idea and recipe page. Gary had problems for years with phantom smells before finally losing his sense of smell completely. Texture becomes your primary goal when you’re cooking for someone with total anosmia.

We may be reaching a bit, but we hope to keep our front page content fresh this year along with a couple of new blog posts each week. Gary has six doctor appointments scheduled for January including two overnight trips up to Little Rock so it’ll be blogging on the go this first month.

Rare Disease Day 2018


February 28th is Rare Disease Day, so we’ve been trying to get our feet wet with a little awareness campaign of our own. The theme this year is ‘RESEARCH.’ We’ll be passing along more information this month.

There are chapters in the U.S and many countries in Europe. Their goal is to promote funding and research for over 7,000 rare and orphan diseases.

Our Newest Awareness Project

Gary has set a goal to spread awareness about Superficial Siderosis as much as he can so I made him this short animation. It’s our second attempt, but we hope you stumble across it in your travels around the web. You are more than welcome to share it.

We wish everyone a healthy 2018!

2 Replies to “A New Chapter For 2018”

  1. Fiona Parkinson

    Love your new look web page and also your blog Rori. This page is a fantastic source of up to date information

  2. Morris Butchart

    Morris Butchart Excellent information Rori, thank you yet again for helping with clear explanations and advice. Such detailed information is very welcome especially as SS is shrouded in such mystery.

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